ready to go class deliberation and discussion on a variety of topics current and rel vantd today. >> join thousands of your fellow teachers around the nation of a member of c-span classroom. it's free and easy to register. if you register now request our free classroom size timeline poster. a graphic display to have biographies of all 45 presidents. >> the alzheimer's foundation of america estimates that over five million americans live with that disease. the snetd special committee on ageing held a hearing. witnesses included nbc journalists and women's alzheimer's's movement maria shriver. this is two hours and 20

minutes. cloish [ applause ]

this hearing will come to order. first of all, thank you for that wonderful welcome, which i know was for maria shriver, but we senators will pretend that it was also for us. [ applause ] good afternoon to all of you. i'm delighted to convene this annual hearing to assess the arc of alzheimer's from preventing cognitive decline to assuring quality care for those living with dementia. it's always so inspiring to sit here and look out at that sea of

purple. but it's also a reminder that this theshl disease has affected each and every one of you in a personal way. over the years, i have met family members who have sacrificed so much to care for their loved ones living with this disease. i've met americans living with alzheimer's with courage and determination. many of you are here today and we welcome you. two years ago i met bob o'keefe from waterboro, maine. alzheimer's ran in bob's family. his father and older brother both had it. so bob decided to get tested early. he received his diagnosis in

2009 and immediately he became a fighter. he walks daily and reads a couple of books a week. he organizes support groups in his small rule community. he told me there are days that are overwhelming. but, he stressed, never quit. every day is a new day. today we should ask what can we do to help people like bob, b given our rapidly ageing population, we can not afford to do nothing. alzheimer's is a devastating disease that exacts a tremendous personal and economic toll on the individuals, families, and our health care system. approximately five and a half million americans are living with the disease, including 27,000 in my state of maine.

that number is soaring as our population grows older and lives longer. if current trends continue, alzheimer's could affect as many as 14 million americans by the year with 2050. in addition to the human suffering it costs, alzheimer's is our nation's costliest disease. the united states spends more than $259 billion per year, including $175 billion in costs to the medicare and medicaid programs. it is the only one of our nation's most deadly diseases without an effective means of prevention, treatment, or a kush. we do nothing, the alzheimer's

association forecasts that this disease will cost our country an astonishing $1.1 trillion by 2050 and it will bankrupt the medicare and medicaid programs. the good news is we are making progress. in 2011, napa, which i co-thurd with then senator evan bayh became law. it created a national plan to combat alzheimer's that is updated annually. napa focuses our efforts to accelerate progress towards better treatments and means of prevention and ultimately a cure. in the biomedical world of research, we are also making progress. scientists are conducting

prevention clinical trials that never would have been possible even a few years ago. and i've had the great privilege of visiting with some of the research scientists who are on the cutting edge of doing clinical trials and laboratory work and it is exciting. in fact, senator casey, i went to the university of pennsylvania, which is doing tremendous work, and i'm proud of the work that jackson laboratories in my state is doing, and harvard, and the list goes on and on. today through advances in imaging technologies, we are able to identify some of those who are most at risk for alzheimer's and test interventions before symptoms develop. although we do not yet know how to prevent alzheimer's, we are advancing in our understanding of the disease.

its progression does not happen overnight. it is preceded by years and perhaps even decades of changes in the brain and a continuum of changes in behavior, including cognitive decline. a growing body of evidence even suggests that lifestyle factors could decrease the risk of cognitive decline. today we will learn about the state of the research on factors such as cardiovascular risks, physical activity, diet, sleep, social engagement and cognitive training. if we start today, a public health approach to improve brain health may well be possible. for those living with the disease today and p given the rising projections for the future, we need to ask are we

equipped to provide the best care across various settings, from homes to hospitals, we know that the number of geriatricians falls short of the growing demand. we know that those living in rural areas such as in my state that respite care is far too scarce. we will discuss innovative approaches to delivering dementia training to health care providers across the spectrum. from primary care physicians to nurses to social workers and community health workers. and family caregivers are especially important as part of this picture. last year more than 15 million americans provided 18 billion hours of unpaid care to family

members and friends with alzheimer's disease. this is valued at more than $230 million. we will shine a light on how to better support these efforts. when i look at the arc of alzheimer's, i recognize both the progress we have made and how far we still have to go. we have come a long ways in advancing research through more robust funding. last congress we increased funding for alzheimer's research by 60% to almost a billion dollars. the fiscal year 2017 appropriations bill as reported by the appropriations committee on which i serve would take us to nearly $1.4 billion. now, why are those figures important?

well, the experts have calculated we need to invest $2 billion a year in research funding to achieve our goals. we certainly cannot afford to go backwards at a time of such great urgency and progress. and that is why i so strongly oppose the administration's plan to slash funding for the national institutes for health. that's the last thing we should do. [ applause ] i want to thank all of our witnesses for joining us today. and i especially want to thank each and every one of you who have traveled from your home states to be with us.

some of you remember from last year that i wore this same purple suit because it's the color that we're all using today. this suit is like 15 years old. and i really want to retire it, but i made this pledge that until we have an effective treatment, this suit stays in my closet. [ applause ] so senator casey, i'm delighted to recognize you for your opening statement. >> chairman collins, thank you very much. and thank you for saying some things that elicits applause. that doesn't happen much in hearings. so we're grateful. but i do want to thank you for calling this hearing and for your dedication on this issue. it's a topic that i think touches everyone in this room in one way or another.

some more directly, obviously, when it's a family member. but whether it's a parent or a grandparent, a sibling or a friend, or even a neighbor, you know what this fight is all about. our witness today comes to us in that fight as well. from all across the country. and i know that a little bit later i'll have an opportunity to introduce phyllis gallagher from pennsylvania not far from my hometown of scranton. we appreciate her being here today. phyllis cares for her husband john who began showing signs of early onset alzheimer's at the age of just 49. and we're grateful she's willing to do that today to provide that testimony. it's also an honor, of course, to have maria shriver here with us today. and to help raise awareness about the issues that families across our country face in families like hers and like the gallagher family.

alzheimer's disease severely impacts both the lives of those who are diagnosed with it and the lives of those who care for them. just consider this just in one state, pennsylvania, 270,000 people ages 65 to older currently live with alzheimer's. providing much of the care for these individuals is an enormous but often unseen army of caregivers. including friends, family, and neighbors. just as senator collins alluded to earlier. in my moem state of pennsylvania, an estimated 673,000 people provided unpaid care to a person with alzheimer's related dementia just in 2016. so 270,000 people living with alzheimer's. 673,000 providing assistance. so those numbers will only grow. and not only in a state like

ours, but in states across the country. so that's why we're here today. to talk about how we can slow down this disease and ensure that those who develop the disease itself receive the best medical care and the best support possible. scientific research is providing us with new insights into how we can better control the impacts of alzheimer's disease. for example, we're discovering that physical activity can prepare our brains to fight back against alzheimer's and to potentially delay the onset of symptoms. increasingly we're hearing the experts tell us, quote, what's good for your heart is good for your brain, unquote. we must continue to support research in the quest for interventions that can help us prevent the onset of the disease and one day develop the cure. until that time, we must focus on making sure that those who are already living with the disease can get the best care possible.

this requires that we have a health care workforce, properly trained to address the unique needs of individuals with dementia. this must include care providers across a continuum of care. primary care providers to nurse practitione practitioners, to of course direct care workers. we must also grow the number of doctors specializing in health issues that affect older americans more broadly. someone living in an apartment building in philadelphia or on a farm in washington county, pennsylvania, must both have access to care when they need it. all of this will not be enough, though, if we don't also engage the largest component of our care giving workforce. our family care providers. caring for a loved one is emotionally, physically, and financially draining. we know that.

we also know that family caregivers require our support and need to be provided the resources they need to properly care for both their loved ones and themselves. as experts tell us, we've made progress in all of these areas. research, workforce, and care giving. but our work is far from over. and in some cases, it's just beginning. we know as senator collins just told us, funding -- funding is critical. and i join her in that disagreement. i'll add even denunciation or condemnation of any budget proposal that cuts nih the way the budget proposal does. for too long -- [ applause ] for too long we haven't made progress on funding. last year we had a breakthrough. our great bipartisan moment which guaranteed it didn't get a lot of coverage, but it was a

great moment. and at that time we moved in the right direction in terms of funding nih. this budget idea -- or proposal i should say, would be a giant step backward or more than one step. so i'm pleased to join her in that effort. i'm also committed to helping us get to the point where we're getting closer and closer to the $2 billion funding targets that experts tell us that we need. over the past several years with the hope of -- or with the help of so many paem eople in this r we've made progress in funding, but we've got a long way to go. let me just wrap up with this one message. in addition to focusing on these priorities, we've got to make sure that this stays in front of the american people on a regular basis and the leaders here in the senate and the house. we can't look at the faces in this audience, people who have come here year after year and

the pain and the heart ache that so many have suffered with regard to this terrible disease. and not insist that more has to be done. we need to keep investing in science, keep supporting clinical trials, and keep supporting families. that's why this gathering today is so essential. for parents, for patients and for families. let me just conclude as well with a reference to two programs that i think are critical to this. medicaid and medicare. we had an effort that was undertaken most recently which in my judgment would have hurt medicaid terribly. we have to make sure we stop efforts that are headed in that direction. we've got to step up the fight against alzheimer's, if anything. if anything, increase the pace and the intensity that we bring to this issue. i'm grateful that you're all here on this day. we're grateful for your

continuing commitment. i'm grateful for the witnesses' testimony as well as our chair getting us together today. thank you, chairman collins. [ applause ] >> thank you very much. i want to acknowledge the presence of many colleagues here today. senator fisher, senator tillis, senator jill bragill brand, and senator warren will be back. i'm not delighted to brus our first witness maria shriver. miss shriver is a journalist and the founder of the women's alzheimer's movement. miss shriver is a champion in fighting alzheimer's disease. she founded the women's alzheimer's movement to advance research and to find out why two out of three brains that develop

this disease belong to women. she has kicked up the move for minds, a partnership to raise money for research and raise awareness about lifestyle changes that one can make to promote brain health. miss shriver, i so remember your previous testimony here in 2009 you testified so poignantly about the story of your father and i'll never forget your telling me that when he could no longer remember the names of his loved ones, he could still recite the hail mary. that was a poignant moment in your testimony. i also want to acknowledge that your daughter christina is here today and we're delighted to have her as well. thank you for all your work and please proceed with your testimony. >> well, good afternoon. and thank you, chairman collins, ranking member casey, and the

members of the committee for inviting me here today. it's an honor to be here with so many extraordinary people. every single person behind me could actually be testifying and tell an incredible story. so i'm honored to be here speaking on behalf of all of these incredible people. as chairman collins mentioned and as some of you may know, i have been here before. eight years ago, to be exact. in march of 2009 i sat here and testified about how alzheimer's had taken up residence in what had been my father's beautiful brain. my father sergeant shriver was an idea listic servant. his mind was as sharp as they come. a beautifully tuned instrument that left people in awe and inspired. he was an expert at sharing his

passions with the public, thought leaders, and people like yourself. he also came to the hill to advocate for increased funding for his beloved peace corps and all the war on poverty programs he created includie ining head , vista, legal services for the poor. he loved working this building and he was really good at it. he knew every senator and congressman by name. and if he were here today, he'd know every single thing about each and every one of you. about your careers, about your interests, your politics, your families, and yet your soft spots. he would know a lot about that. so imagine how painful it was to watch when this walking encyclopedia of a man went from knowing every fact about everything that had ever happened in the history of this country to not knowing what a spoon or a fork was. to not knowing what my name was or not knowing his own name. two years after i testified, my

father died of alzheimer's disease. and now i'm back. back again to testify. back again to sound a 911 alarm about the biggest biomedical crisis facing the world today. and i say that it is a world crisis. back again to focus your brains on this killer ravaging brains and families across this great country of ours. believe me. i wish i didn't have to come back here to testify. it wasn't on my calendar, but when i learned that the funding for nih and alzheimer's research might be in jeopardy, i practically ran here to say this just cannot be. wait a minute. there must be some mistake here. i know that this committee is well aware of this crisis unfolding in homes across this country. i know you know about it firsthand, and i know you know about it from the people that you represent, but let me use

this moment to remind you here on the committee and the american public just what the up to date facts really are. and trust me. these are real facts. every 66 seconds another brain will develop alzheimer's disease, and two-thirds of those brains belong to women. two-thirds of them, and no one knows why that is. a woman in her early 60s is twice as likely to get alzheimer's in her lifetime than she is to get breast cancer, and the statistics are even more alarming for women of color. african-american women are twice as likely to develop alzheimer's as caucasian women, and latinos 1 1/2 times more likely. on top of that, more than 15 million americans are caring for someone with alzheimer's or other forms of dementia while they're also parenting and holding down full-time jobs.

and just so you know, two-thirds of those caregivers are also women. all of that is why i founded the women's alzheimer's movement to educate all of us about the disproportionate effects of this disease on women. i believe that determining why women are more affected by alzheimer's will help us unlock some of the mysteries of this disea disease. instead of just focusing on plaque formation in the brain, let's focus on women's brains, on their chromosomes, their hormones, and on the way they process inflammation. in fact, i believe studying women and getting more women into clinical trials could possibly lead to the cure for all of us. i don't believe that this is sexist. i believe it is just plain ole smart. it's smart.

[ applause ] >> thank you. it's smart because alzheimer's is the most complex, mysterious, and expensive disease in the united states. more expensive than heart disease and cancer, and it's the only one of the top ten diseases without a means to prevent, cure, or slow its progress. in fact, since 2000, the number of deaths from breast cancer, prostate cancer, heart disease, and stroke are all down, but alzheimer's deaths are up. up by a breathtaking 89%. it is bankrupting families, and it's on its way to bankrupting this country. this year if you had families' out of pocket expenses, the projected total will drain the economy of $259 billion. and if our government does nothing, the costs are projected

to explode to an astounding $1.1 trillion. i wonder if we can sit a minute with those incredible astounding figures. i want to take a moment to thank you, ms. collins, for introducing bipartisan legislation to treat alzheimer's by 2025 is indeed an urgent, and i say urgent, national priority because right now it is the most seriously underfunded disease in our country. this at a time when every alzheimer's scientist will tell you that we are at a critical and potentially groundbreaking moment in the history of the research of this disease. so much extraordinary progress has been made, but now it's stalled. the only thing many of them say keeping us from pressing on to find a cure is the federal funding to move us forward. for instance, my friend dr. rudy

t tanzy at harvard, he is a top alzheimer's researcher who discovered the first gene for the disease 35 years ago and his lab has found two dozen more in the last decade. he says that we've learned from studying these genes important clues about what needs to be done to prevent alzheimer's a decade or so before any symptoms arise, but he says laboratory budget constraints mean researchers like him are only able to follow up on only about 10% of the clues and information that's available. and that's just one lab. the united states government is better than this. we're letting down the millions who have this disease, the millions who are caring for them 24/7, and it is a 24/7 job. and the millions who are going to get alzheimer's disease and other forms of dementia as we,

the baby boomer, and our millennial kids continue to grow older. right now 10,000 people are turning 65 every day. remember i said that brain develops alzheimer's disease every 66 seconds? by 2050, someone in the united states will develop alzheimer's every 33 seconds. every 33 seconds. we have to fund this disease at the level it deserves before it levels all of us and our health care system. [ applause ] >> we have to fund it at the level we funded aids and that we funded cancer because this absolutely -- this is an equal opportunity crisis. a tsunami that can crash into any and all of us, republicans, democrat, independents. and make no mistake. without a federal committee, like you have spoken about, we

are going to lose this fight. you know, over the years, i've wracked my own brain wondering why alzheimer's doesn't get funded at the level of these other diseases. i've asked myself is it not being marketed properly, is it not sexy enough, hip enough. i've wondered if it is because we think it is a normal part of ageing, which of course it is not or is it because our country is so obsessed with youth and none of us want to grow old. maybe it's sexism maybe because it disproportionately affects women. so what is it, i've thought to myself. is it because deep in our hearts we're all so terrified of losing our own minds that we want to

push this disease out of the field of vision or deny that it even exists at all? well, the truth is we can't deny it away anymore. alzheimer's is everywhere, and it can develop in your brain for 20 years before a single symptom ever shows up telling you that you have it. and what does that mean? it means that the chances are that several of us sitting in this room right here today have it right now and we don't even know it. think about that for just a minute. imagine one of you up there. imagine one day turning to someone that you've served with in this body for years and not knowing who they are. imagine looking at the person in your home who you have loved for decades and you can't remember their name. imagine your family being unable to care for you physically, financially, emotionally, or spiritually. imagine. imagine that scenario.

well, millions of americans do not have to imagine it. probably most of the people in this room don't have to imagine it because they're actually living it. one of them that i asked to join me here today in this room is 61-year-old pam montana. she's right there. she's sitting behind me. i wanted her to come here today because she was just diagnosed with alzheimer's. her diagnosis forced her to leave a successful career at int intel, and it forced her husband bob to quit his career as well so he could care for her. they face an uncertain future and a scary one at that, but i wanted you to see pam because she is the face of alzheimer's, a woman in her prime, a mother, a wife, someone who had a successful career who was earning money. this is the face of alzheimer's. and she and her husband, along with all the people in this

room, have come here to capitol hill from all over this country to use their voices, to advocate for increased funding, to tell you what it's like to live like this every single day 24 hours a day. you know, there are so many brilliant minds now focused on this issue, so many forceful advocates like those of you on this panel and the 1300 alzheimer's association advocates that are fanning out across the hill today, so many ones like the ones in this room who can no longer accept when they are told we just don't know what causes this disease or what to do about it. for them, that is plain old unacceptable, and for me, as a child of alzheimer's, it's also unacceptable. and as someone who is pam's age, it's terrifying. the statement we just don't know needs to be repealed and replaced. it needs to be repealed and replaced with this.

we do know, and here is what you can do. because it wasn't so long ago that an hiv/aids was a certain death sentence and cancer pretty much was uncurable and now so many of them are curable. science, an investment in science, has turned all of that around, but nobody, nobody who has ever been diagnosed with alzheimer's, has ever survived it. we can and we will do better than that. you know, when my uncle john f. kennedy was president, he challenged this country to put a man on the moon. it had never been done before. well, today i challenge you to also do something that has never been done before. give us the first person who survives a diagnosis of alzheimer's disease. i'm asking this -- [ applause ]

>> i'm asking this congress to do what it takes to get our brilliant researchers back up and working at full capacity in their laboratories around this country doing what they do best, which is finding solutions, finding answers, finding cures, and not only that. until we find a cure, we have to do a better job, as you've talked about today, educating the public on ways to live healthier lifestyles. we now know through science and technology that the brain never stops developing. believe it or not, that's new, so we need to educate people on the connection between brain health and healthy diet, physical activity and stress reducti

reduction, and how they can expand their brain power with lifelong learning and social connection. this is a priority for the women's alzheimer's movement, which is why we have partnered with the equinox sports clubs in gyms all across this country for a national program called "move for minds." we're determined to get this message out to mainstream america that they can control their brain health, that their genes are not their destiny. we also need to get support to the millions of caregivers. we've spoken about them today. the ongoing stress on these families is unimaginable. they need the resources to help them care for their loved ones while also working. and we must also ensure that there's a well trained professional workforce ready to provide quality care to the increasing number of people living with alzheimer's and other dementias and who will need their services at home and in facilities as they grow older. i know you might be thinking that this is quite a to-do list,

but i've never met anybody and i've never met a woman who wasn't good at crossing off her to-do list. and i strongly believe this to-do list is something we can actually do, even in this current climate and perhaps more so in this current climate. the american public is desperate to see democrats and republicans work together. they are desperate to see success here in washington, and this is a great place to start. so i am asking all of you with the brains that you do have today to come together, democrats and republicans, and make a commitment. let's do what we need to do to stop the onslaught of this mind-blowing disease because america should be the leader in solving this global medical crisis. we're the greatest country on the planet, and finding a cure for this disease will make us the smartest one to boot. thank you very much. [ applause ]

>> thank you so much. >> thank you. >> thank you. thank you. >> don't make me cry. >> thank you so much for your very compelling testimony as you can see from the response that you've received. i think you have motivated every single person who is here as an advocate to go to their senators and house members and tell the story of what is needed and that we certainly cannot stop now. we have to continue to go forward and that does require funding. and if ever there were a case where investment is going to pay

dividends and ultimately not only save money but improve the quality of people's lives, it is an investment in alzheimer's disea disease, so -- >> absolutely, and this indeed will make america great again because this is, as we have said, the most expensive disease in the country right now. >> it is. >> so funding it and finding ways to prevent it and/or cure it will save us billions of dollars. >> you raised a very interesting point about why people are less comfortable with talking about alzheimer's disease, and you told the committee back in 2009 when your dad had been diagnosed six years earlier that you had felt at the time confused, powerless, and alone. i think a lot of people still feel that way when they get the

diagnosis or when their loved one does. do you feel there's a way that we can reach out more to families who are dealing with this devastating disease? >> well, yes, and i think that all of the people in this room i think feel very hopeful. they're putting their hopes in this committee. they're putting their hopes in their government that you will actually secure the funding to find a cure for this disease. i think the more we talk about subjects that are somewhat taboo, the more we talk about ageing, what it's really like, the strength it really takes to age, the more we talk about the truth about care giving, how complicated and how difficult that is, the more we try to engage not only just lawmakers but corporate america, the more we try to get companies to look at care giving leave, the more we try to encourage them to keep people working who are boomers, the more we really talk about

the reality of how our country is ageing and the needs of our population, i think this disease will lose its stigma and people, i think, don't want to talk about it because they're afraid of losing their jobs. they're afraid there isn't a cure. they're afraid if they tell somebody or even if they get tested, what hope is there for them. which is why we're often talking about the lifestyle choices now that we're making. what we're learning is, as i've said, our genes are not our destiny. there are things we can do to keep our brains engaged. things that 20, 30, 40 year olds need to start doing. we're learning the benefits of interval exercise, of certain kinds of food, of meditation, of how we manage stress. there's nothing more stressful than trying to manage a job, be a parent, be a caregiver. people out in mainstream america see their elected leaders

acknowledging that funding needs to happen for this disease, that support needs to happen for the caregivers, that the more they see success here, the more hopeful they will be out there. >> i think that's exactly right. [ applause ] >> i also believe that people when they're first diagnosed are worried they're going to be isolated and treated differently by their family and friends because of the stigma to which you referred. i want to switch to another topic in just the less than two minutes i have left. i know that you've kicked off the program "move for minds," and you alluded to it in your testimony. and this is fascinating because we're going to hear from our next panel about some of the interesting research that

suggests that in addition to the genes that may produce alzheimer's, particularly early onset, that there are ways that we can stave off or delay the disease for some people, not for everyone. could you talk more about what you've learned about the body/mind connection? we're starting to talk about that. >> well, amazingly, people are surprised that they're connected, which is so extraordinary. this is one body, and our brains and our bodies are connected. senator casey was mentioning we're learning a heart healthy diet is also good for the mind. we are learning that. we are learning, as i said, that the mind can continue to grow. it's important to learn new things. just because you learned certain things up until you were 30 or 40, doesn't mean you don't have to keep engaging the mind. and through technology, we've

been able to study the brain and see how it can continue to grow. a piece i'm doing for nbc this week is on the super ager brain. and there are now studies of people who are on their 70s and 80s who have the brain of a 20-year-old. it is really interesting. they are people who push through, who are constantly learning, and when it's hard to learn, they push out of their comfort zones. they're also people who manage stress a lot differently than a lot of other people. so we're beginning to learn things about how the brain ages. one of the things that certainly "move for minds" is advocating is a holistic approach. learning, staying socially engaged, exercise. every researcher and doctor that i have spoken to, as i have traveled this country, i say to them if there's one thing i can tell people to do what would it be. they say exercise, exercise, exercise because that pushes the blood to the brain. eating a mind or brain healthy diet, exercising, challenging

yourself, pushing yourself out of the comfort zone, eating properly, meditation, mindfulness, turning off technology, resting your brain, sleeping, these are all lifestyle things that we're now learni learning effect not just the body, but the brain, and we can start doing them when people are very young. alzheimer's manifesting 20 years in your brain, this is a message we want to get out to 30, 40, 50-year-olds and particularly also women. that is why i'm excited about a lot of the research that we can perhaps get going on women because we are different, and women are handling these lifestyle issues differently than men. and that really hasn't been looked at. >> thank you very much. senator casey. >> thanks very much, madame chair. ms. shriver, we're grateful you're here again. we wish you didn't have to come back because we want to make more progress on this challenge,

but i thought one of the best things among many things you said that were inspiring is we hope that down the road we'll be able to say here's what you can do as opposed to something else. we're grateful that you brought that sentiment and that goal to us here in the senate. and it is a mission. this is, i think, a mission where we have a great country, and you've given us a good road map and a good to-do list. we're grateful for that. i wanted to focus on a program that i think we're all more not just more aware of now, a program that we appreciate more than we did even a few weeks ago, a few months ago, and that's medicaid. among the many things medicaid does, for example, it provides health care for 1.1 million children in my home state. lots of folks getting into nursing homes because of

medicaid. and a third major category are americans with disabilities. your family has done so much. it's hard to calculate the impact your family's had in a positive way on people with disabilities. we're told that one segment of the disability committee, those with down syndrome, those americans are disproportionately impacted by alzheimer's. and i wanted to ask you what would you hope we can do about that and if you have yet another to-do list, we would love to have it.timothy, who runs the special olympics would best be equipped to do that. but the statistics do show that people with down syndrome, 100% of them end up with alzheimer's, but only 50% exhibit the traits. i think there are some interesting studies going on. some families have very bravely volunteered to be in those trials and those studies.

one of the things we're trying to do is get more americans, be they families with down syndrome or just women and men in particular, into these clinical trials. i've talked to researchers all across the country. they say they have a really difficult time getting people to participate in clinical trials. and so this is a big mission of mine to actually ask people, also to ask corporate america, to make it easier for people who work for them to participate in clinical trials. now if you participate, you have to take vacation time or a sick day. what about the idea that they would pay you? you don't have to take time off to actually participate in a clinical trial because it's a form of national service. we all benefit from individuals brave enough who take the time to participate in clinical trials. so once again this comes back to funding. this comes back to making it possible for families to participate in trials, be it a family with a down syndrome member and there's also a lot of

fear that goes into that. obviously participating in those trials, i think people are generally afraid to participate in a trial, but i have also met other ones who say knowledge is power. they know more people who would participate if it was easier to participate. >> all right. appreciate that. finally, i just wanted to thank you for highlighting the disproportionate impact this disease has on women. i grew up with four sisters and have four daughters. >> whoa! >> this is especially -- >> how are you? >> doing just fine. >> there's a book in there somewhere. >> but we're grateful. i just hope we can -- and this is a challenge that you pointed to and i think all of us wrestle with is not just the -- not just the focus on funding, but sustaining that focus over time. >> right. >> because a lot of things in

the senate and the house and i guess society more generally, we go from one issue to the next. what is a front burner major issue on a monday afternoon can be forgotten about even by tuesday morning. we have to figure out more and better ways, i think, to sustain the focus on the urgency, the primacy, of getting more funding. and i'm grateful that you gave us the inspiration today to do that and all the data that under girds that urgent priority. >> thank you, senator. and i think what is particularly alarming to me is that most women don't know that they're at risk. they don't know these facts. they don't know that there are things they might be able to do today that could prevent this or delay, and they don't know there are things they can begin to do in their daily life that might help them out, but i also think more and more advocates, like the ones in this room, are going to tie their votes to people who support this kind of funding.

they're getting really smart about advocating and making sure that their voices are heard, and i encourage them to do that because this needs to be a front b burner issue every single day. not just for the people in this room. for many, it's too late for them, but for the millions turning 65 every single day, the baby boomer generation and our children. because if i were to get alzheimer's, right, it's going to impact my entire family. it's going to impact the future of my children's work life. it's going to impact their parenting, how their families unfold, and i happen to be able to afford care. millions and millions of americans cannot handle the out of pocket expenses that they're incurring today. it is putting them into poverty on the brink. they're quitting their jobs. they're mortgaging their homes, and it is excruciating, so this

is a front burner issue if i've ever seen one and i've been around politics a long time. this i78 pampacts the entire fa. >> thank you very much. >> thank you. senator fischer. >> thank you chairman collins and ranking member casey for convening this important hearing today. and i also want to thank ms. shriver and all our witnesses for being here today. the impact of alzheimer's is felt far beyond just those who are inflicted with this really evil disease. it's felt by family and friends, caregivers and others who interact with these individuals. every family has a story. my sister-in-law is a victim of early onset alzheimer's, so i am thankful that we're having the hearing today on this topic. ms. shriver, through your work across our country, what are some of the memorable and innovative really local or

community-based approaches that you've learned about or that you've seen that will -- and maybe that you've even helped to develop that will help the victims and help contribute to this fight we have against this disease? >> well, i think -- thank you. and i'm sorry for the pain in your own family. thank you for sharing that. one of the big things that i'm always in awe of is that families do share their stories because it takes great bravery to share your stories, and that's how we get these stories more out into the public arena and it's how we begin to destigmatize this disease. when i was first lady of california, i came into contact with several different kinds of day care centers where working women could bring their children and their parents simultaneously. it was really quite inspiring to see kids who are about 5 or 6 read stories to people who are grandparents. this was, i think, an innovative

approach because you didn't have to go to two or three different locations to drop a loved one off. one of the great challenges i found when my dad got alzheimer's and my mother began to get strokes was finding caregivers in the professional workforce who were well trained about the differences in these brain-related challenges. so someone who has a stroke versus someone who has alzheimer's or parkinson's or another form of dementia, we need a more educated workforce and obviously a care giving force that makes a living wage as well, but i think there's a lo lot of innovative facilities going on. people who are using music and art and different kinds of therapy to engage the mind. what we are learning is that music engages parts of the brain, as senator collins said, my father didn't know who i was, but he could say a hail mary and he could sing a song that he knew when he was 18, so there's

still so much we don't know about the brain. i think we have to look at just as we look at parental leave, elder leave, caregiver leave, look at different forms of day care, child care, how we can combine that in different locations because often those with alzheimer's at later stages are doing a lot of the same activities that little children can do. also looking at more intergenerational living systems. i think i was very excited. i've seen homes where young kids were going to college and they lived rent free in a building that was mainly seniors with alzheimer's. in exchange for room and board, they played music or they went and had meals with people with alzheimer's and how that benefitted more generational living. i think that's an exciting new space. so whether it's in terms of day care and elder care combined, whether it's terms of young

people, millennials, living alongside people who are 70 and 80 years of ainge, i think that an inspiring new wave of the future. >> i know since last you were here we have seen some amazing strides in research and the development we've had there. we've looked at education and prevention and treatment also. what do you see as the most significant milestones that we've reached so far and what do you envision as being achievable? >> well, i envision a cure being achievable immediately. yeah. i envision a cure. i envision, you know, some pill or like what happened with aids where you can get this diagnosises bdiagnosis but continue to work and live and be a productive member of society. i believe if the federal funding reaches the level that we have

asked for or beyond that, a cure is within our reach. as i said, it happened for aids activists. it happened in the cancer field, and i see no reason why it can't happen in the alzheimer's space as well. i think this is a very complex and mysterious disease. i think it's -- every researcher i've talked to say it's really -- we have to actually approach it perhaps differently than we've been approaching it in the past. we have to look at people earlier. we have to look at women versus men. we have to look at chromosomes. we have to look at inflammation. we have to look at things that perhaps we didn't look at before in focusing more on plaques and tangles, but i'm really hopeful. really hopeful that a cure is within our grasp. and i don't mean 20 years from now. i mean five or ten years from now. >> thank you. thank you, madame chair. >> thank you. senator tillis. [ applause ] >> but i would just add that i'm

going to be back here again if we don't get the funding and we don't get a cure. [ applause ] >> and i retired my purple dress. i'm going to go get a new one and come back here. >> hopefully you won't need to. >> i hope to never see you again. >> oh, okay. >> but in a good way. >> we just met. okay. >> thank you so much for coming. do we have any of the north carolina group in the crowd here that i met with earlier? thank you all for coming back. this is the third year that they've been back, and this is something that i was interested in when i was speaker of the house. we worked on things within the state purview. a lot of that had to do with caregivers. that's one of the things i happen to agree with you. the fact that you came here because you think nih funding is at risk is a real problem, and it's a problem that we need to

solve by just simply making this a priority. and i think that you have a number of people here who are going to work to do that. you know, it's the head meets the heart policy. when i was the speaker of the house in north carolina, i said the policies that i liked the most were the things that had an enormous impact on an individual and their families and saved a lot of money. >> right. >> that then freed up resources for other things that we needed to do. so i think we better need to educate our members who think there is not a compelling fiscal reason for doing it. it's not the primary reason. it's a secondary benefit for actually trying to help people who have this horrible disease, so thank you for your advocacy, but i want to talk about things that we also needed to for the caregivers and things we need to do to educate people who are going through this just because of the numbers. they're going to go through this and understanding what they need to do to make this horrible

journey the loved one is going to go through manageable. so what else can we do or what other things should we be looking at azams matters of priority that need to be nationalized that better prepare caregivers for the hard task they have to help their loved ones? >> well, i think you're going to hear from some people who are doing that 24/7 in just a few moments, and i think they would be better to advocate exactly what would help them. every caregiver that i have met, and i have met thousands and thousands of them, be it men or women. i have met thousands of women. i have met extraordinary men. bob sitting right here behind me. extraordinary men who make it a priority to care for their loved ones. great stories of love and commitment and sacrifice going on in this country day in and

day out. most of them say they need a break. they need time. because very often the caregiver gets sicker than the actual person than they're caring for. they need someone to come in to help them that they can afford so they can some time to focus on their own mental and physical health. so i think routinely you hear that. making it affordable and that the person that they can actually hire is well trained in what their loved one needs. we need a care giving force -- when i was looking for a caregiver for my father, no one was trained in what it took to deal with someone who had alzheimer's, so they didn't understand how he might be different from somebody else than they were assigned to care for. i think they would advocate and i think they would tell you we need a trained workforce, and trained in the different forms of dementia, right, and different brain-related challenges. they need to be able to afford

care giving so that may might be able to continue to be the provider in their family. as i mentioned with pam being diagnosed, she quit her job and bob had to quit his job as well. that's not sustainable for families, right? and that is what is happening because it's a 24/7 job. so i think being able to afford care giving, being able to find educated caregivers and a workforce, as i said, that is capable of handling the tsunami, also to encourage people to go into this line of work. it is a growing line of work. paying them a living wage. an educated workforce, and i know that's what you want to talk about as well today. >> well, madame chair, i've got another committee that i hope to get back to and ask questions of the panel. otherwise i'll submit questions for the record, but again i think that we need to continue

to fight for -- i support it -- the funding, the increased funding, for alzheimer's. >> thank you. >> i will continue to support it. we need to -- also, you made a point in your statement that i think is very important and it has to do with bipartisanship. i'm sort of the kind of a consulting nerd here. we have to think about other ways as we look for funding, we also need to look at ways to look for ways to be more productive with the funding that we're producing. and i think this represents an opportunity for republicans and democrats to come together and look at some of the hurdles, whether it's research, regulatory environment, authorization for new therapies, those sorts of things that we can look at and find ways to remove barriers to get more productivity and a faster path to treatments and a cure. and it's something that we need to focus on, not just talk about it because we talk about it a lot, but focus on it because i

think there are billions of potential dollars out there beyond what we're putting in nih that we can unleash and accelerate that time to a cure. >> absolutely. and accelerating certain drugs that's another thing that researchers said takes forever to get through the pipeline. you, senator, bring up a very good point to look broadly at the research, at the fda approval process, how do we get certain drugs that might be promising into the pipeline quicker, so i think that's exciting to me that you're willing to look at that. because in the long term, this is something that will save our country billions and billions of dollars. so this is an example for the country where democrats and republicans can work together on. this is a perfect example of an issue where head and heart can work together and where it doesn't make economic sense not to work together, whether you look at it in terms of humanity,

whether you look at it in terms of fiscal responsibility. it all lines up. that's why it's so incredulous that we would even think about cutting it instead of expanding it because it's impacting so many families of both political parties, independents, greens, you name it. it's an equal opportunity offender, so i think we can put our brains together and say this works on every level. let's increase the funding. let's look at the pipeline for drugs. let's look, as you said, at all different hurdles that might be impacting research and look at it holholistically, just as i'v been talking about. alzheimer's is one form of dementia, right? and there are many forms of dementia, but it's leveling our families all across this country, so i welcome the fact that you're willing to look at all different aspects of it. >> thank you. >> thank you. >> thank you, madame chair.

>> thank you very much, senator. senator blumenthal. >> thank you, madame chair, and thank you for being here today. thank you to you and your family for taking on so many powerfully important causes, and i'm not going to embarrass you and them by going through the list, but you have been such a great champion of this cause. and i think the turnout that we see today shows the growing american awareness and support for it. and all the more incomprehensible the budget cuts that have been proposed by the president, 18% in hhs, including $5.5 billion in cuts to the nih research budget. we should make no mistake that the ax will fall on the type of research that is so critically necessary, irrefutably and

indisputably important. i'm very focused on the aspect of this issue that you raise not only from the point of view of individuals, civilians, but also veterans. >> right. >> and i have helped lead the effort on the veterans affairs committee and in the senate to try to deal with the invisible wounds of war, which we know afflict 30% to 50% of everybody coming out of combat. the impacts on the brain, post-traumatic stress disorder not even diagnosed until the 1980s, but leading to dementia and alzheimer's for reasons that we still are exploring through research. >> right. >> and in that sense, you know, i was struck by what you said about the caregivers where the

va and the federal government have only begun recently trying to help people who deal with folks who are afflicted with this disease. they need a break. they need support and insurance and counseling in final wherewithal and basic understanding and support because all too often we think of the hero as being the wounded warrior, which he or she is, but the unsung heroes are also the caregivers. >> right. >> so i have been very glad and grateful that senators collins and baldwin have supported legislation s-1719, the raise family care gigivers act, which begins to work in this direction. i would be interested in more

specific recommendations that you have in what we can do for caregivers. >> i think individuals who are dealing with this 24/7 would best be able to describe what they feel they need. i'm aware of your extraordinary work. this is an area where so many veterans have come up to me actually looking at different forms of post-traumatic stress, looking at different kind of innovative things they think are working on the brain, magnetic treatments on the brain that are not fda approved that seem to be helping, but once again when we talk about democrats and republicans working together, the brain, working on therapies, making the fda approval process speedier for things that work on the brain, is a huge open space that once again veterans can work alongside caregivers. oftentimes when we talk about caregivers people think of it as a soft issue. a long time ago when i was

getting into journalism, people used to say go do women's issues. what are women's issues? you know, care giving, women's stuff. that's hard stuff. care giving, there isn't anything more muscular. >> compared to what we do. >> care giving, that's muscular. that's tough. you have to be unbelievably strong to do what the men and women in this room are doing 24/7. and as late stage happens, you have to be physically, mentally, emotionally, and spiritually like unbelievably strong. so i think that these families need support. obviously as i have said before, financial support, emotional support, time. they need to know that they can continue to care for their family and their loved one, and so they need support with that whether it's through medicaid/medicare. they need that.

and they need hope. i think hope helps us all, right? hope that the government is funding therapies and research and supporting caregivers at a level that we are not seeing today. i think when people have hope, they can get through all kinds of hoops in their daily life. when there's no hope, when they hear that funding is decreased, when they think there's no hope to get a trained workforce out there, it's hard to keep going, right? it's hard. so -- but i think there are people in this room who can better describe what they're up against 24/7 than i probably can. >> if it gives them any hope, i hope you will give everyone you are in contact with the message that on this committee and i think in the senate there is a lot of support for what you're doing and that we will fight these cuts. >> thank you. >> that are propose d, that we

will work -- [ applause ] >> -- that we will work for this cause. and if there is one truth about american democracy that has been reaffirmed for me in recent weeks, it is that people can make a difference. >> amen. >> that every individual can make a difference. >> and you know, as senator collins knows, i've been at this for 14 years, and every time i thought, okay, maybe now, okay, maybe now, but i have never been more hopeful than i am today because i think people are engaged. when you talk about our democracy, people are engaged. they're savvy about their voices and their votes. they know a lot more about the process i think in the last year than perhaps ever before. people are engaged in our civics. they understand what an

executive order is and isn't. they're aware of what nih funding is and what the implications of cutting it, which is why you see so many people here and they're not going to take it. they're not going to step back. they're calling their senators and congressmen. [ applause ] >> and i think that's exciting. i think it's exciting, but it also ought to put everybody on capitol hill, in capitol hill, on alert because people get it now. they get the power of their voice, and they get the power of being here. and they're not going to take these cuts. >> well, thank you very much for your eloquence and your advocacy. >> thank you. >> and for helping to enliven and educate the american public. i would leave you with this quote -- and i'm way of over time, so i apologize. margaret immediamead said never the small group of people who change the world -- >> it's the only thing that ever

has. >> it's the only thing that ever has. >> amen. >> senator donnelly. >> i have that above my computer. >> thank you, madame chair. thank you so much, ms. shriver. i just want to say as an aside my hometown is south bend, indiana. and your family brought the special olympics there many years ago, and it was one of the most extraordinary times not only in my life but in our town's life. and we're still grateful to this day for all that you did to bring it there and for all the special moments and special athletes who were there to celebrate. we really enjoyed it. >> thank you. i remember being there myself and my mother saying, you should go confess to father hessberg. >> we were all in line for that, i assure you. one of things i wanted to ask you was how much hope does it give you when you look at where the research is now compared to

where it was just like two or three or four or five years ago? it's moving pretty fast, isn't it? >> it's moving pretty fast -- >> but not fast enough, right? >> but not fast enough. i would be lying to you if i said to you, oh, i'm really excited, but i actually am really hopeful. as i've said, i've been at this for 14 years, and when i first started, people didn't even utter the word. it was always said in a whisper. people had no understanding of alzheimer's. they didn't really face it person to person. now i don't go 15 minutes on the street or anywhere else without somebody coming up to me talking about how they've impacted -- i mean young people going into neuroscience because their grandmother or grandfather got an alzheimer's diagnosis. i meet men and women who are engaged in advocacy or finding cures or going into day care or the health care business because they've come face to face with this.

and i meet a lot of really young entrepreneurs who are developing apps, trying to deal with care giving demand, who are trying to find the science, who think they can do something the government can't do, so there's a lot of energy around this from the business world, from young people, from advocates. but do i think there's a cure around the corner? i do think there's a cure, and i said this last night, in some dish somewhere waiting to be funded, waiting to be over the final line. i have to be that hopeful otherwise i wouldn't be here and i wouldn't be this optimistic. do i know where it is, no, but do i think it's within our grasp, yes. >> when you said it's in some dish somewhere, that when you go talk to them and you go, well, which one is it, and they go, well, we didn't know and that's

why we have so many places that we're working with, and so i have always thought, and as you just commented, one of the great things they do is we're not chasing this with one line. we've got 30, 40, 50 fishing lines out there to try to catch this cure at some point. >> i think we probably need 100 fishing lines out there. i would advocate we need more fishing lines out there in a broader sense because i think we've been having some fishing lines in some main areas, and i think we need to broaden that. that's why i'm trying to raise money for women-based research. okay, that didn't work. that didn't work. let's look here. let's look at places that we haven't looked. let's try to move it along quicker, and let's look at what we haven't looked at as opposed to continuing to look at what we have looked at that's come up empty. >> you mentioned that two-thirds of folks who have been afflicted with alzheimer's are women. >> right. >> have you seen any research

that gives you an idea why? >> no. and that's why i'm kind of doing this 24/7 because the i don't know is unacceptable. and i go around to different labs. i say, well, have you studied women? no, but we will now. so i think it's just -- you have to also remember i think this is quite new in a way. it hasn't be around in the consciousness or awareness as long as cancer, and it didn't -- it doesn't seem to have the same urgency as aids, for example, but i think we're now at a place where it does. advocates have become much more forceful. we're marketing it actually in a different way. i think encouraging researchers to look at women in ways that they hadn't looked at before is exciting to them. women do have different chromosomes, inflammation, they do process it different. having people look at it perhaps

as type 3 diabetes, to look at it 20, 30, different ways of looking at it is an exciting space that didn't happen before. >> i am just about out of time, but i will make you one promise and this is to everyone here and i know the panel feels the same way. i promise you those nih cuts, they will never happen. >> amen. >> so you don't have to worry about it. >> thank you. thank you. >> thank you. >> thank you. >> thank you, senator. i agree. >> and she's more powerful than me. >> i'm now delighted to call upon another new member of our committee whose birthday happens to be today, senator cortez masto. >> thank you. >> happy birthday. >> thank you so much, madame chair, ranking member. thank you for having this

discussion, and ms. shriver, thank you so much for what you do and being a voice. i always feel that education is that first step in prevention in any manner, and we don't do enough of it at many times. to everyone who is in the room today being a voice on capitol hill for addressing the importance of brain health and alzheimer's, thank you for being here. i really just have a comment. in 1990 my grandmother, whom i'm named after, had alzheimer's, and that was at a time when we really didn't understand it. we didn't have enough health care programs for it. she unfortunately -- she was one of the smartest women i ever met and tough and active in her community, and she came down with this horrific thing in nevada. and my grandfather was her caregiver, and my mother was her

caregiver, and my aunt was her caregiver and my cousins and i and my sister. we were all caregivers. and i remember thinking she eventually passed away in a nursing home. and i remember thinking walking in the nursing home at least she had family around her because there were people there that did not. that's part of the tragedy of this horrific disease that i feel that we need to be spending the money for the research for the cure. i don't know about how you feel, but we are in a state in history right now where baby boomers are ageing out. >> yes. >> health care is going to be -- and the cost of health care is going to be an issue. when it comes to brain health, that's one of the most important areas that we should be focused on doing the research, looking for cures, looking for therapies, and then providing support for caregivers when they have a loved one who is dealing with this issue. and i have to put a plug in for

a center for brain health that is in las vegas. >> the women's alzheimer's movement funds researchers there and at the cleveland clinic. >> for that reason, and i've had the opportunity to sit down with them, and we do not have a cure yet, but with the research we can at some point in time. you're right. it is there. it's waiting to be discovered. there are doctors, there are people there, that are focused on it, so i can promise you this. and i spoke to the group that was in my office earlier. this is my commitment is to continue to fight for the funding. i don't have to -- we all agree. we are going to stop and fight against any cuts to nih, but we should be looking for additional funding that supports the research and the therapy and the support for the caregivers. this is such an important issue for all of us, but more importantly for our futures. and i do not think that the money is wasted. this is an area where we should

be taking our taxpayer dollars and investing in the future of brain health in this country. and so i appreciate you all being here. and i just had -- [ applause ] >> and i just wanted to make that you've got a partner already in me and i will always be there supporting. >> thank you, senator. i think one of the things that you said about education, i think that's a huge aspect of this, is educating people about the power that exists in them to control their health. i think this is a big thing that doctors and researchers are talking about precision, personalized medicine, trying to understand what works for your body, what works for your brain. that's where the future of health care is going, right? so that there's no one -- as one doctor said to me when my father was diagnosed, once you've seen one case of alzheimer's, you've seen one case of alzheimer's. it's a complex disease. we need to encourage people in their 20s and 30s to take

control of their health, be educated about the pros and cons of different treatments, to be involved in their own physical, mental, emotional and spiritual health. >> i agree. thank you for being here. >> thank you. >> thank you very much, senator. ms. shriver on behalf of the entire committee and everyone in this room and all throughout america and indeed the world who have benefitted so much from your advocacy, thank you so much for being here today. >> thank you. >> you are a powerful voice. thank you. >> thank you. thank you senator. [ applause ] thank you so much for having me. it's been an hon for. i want you to know how moving it is for me to be here amongst all of these incredibly brave and

inspirational men and women who are taking their own personal time to be here to speak to all of you, to visit you in the offices. it's one of the most humbling experiences of my life and i've had a lot of different experiences top but to be amongst these people who are fighting for their loved one, fighting for their own health is really an honor and a privilege. and i hope that you fund this disease and i hope that pam montana and others like her who stand behind her become the survivors of this disease. thank you very much for having me. >> thank you. [ applause ] we're now going to move to our second panel of witnesses. and we thank you, again, so much for appearing today. [ applause ]

our first witness on the second panel is dr. christine yaffe. dr. yaffe is vice chair of research in psychiatry at the university of california, san francisco school of medicine. she serves as a professor of psychiatry, neurology, epidemiology and biostatistics. in other words she knows everything. she's also chief of neuropsychology at the san francisco va medical center. in 2014 she was recognized as one of thomas router's world's

most influential scientific minds. next i'm going to turn to my colleague, senator donnelly to introduce dr. christopher callahan. >> thank you, chairwoman collins. it is my pleasure to introduce dr. christopher callahan from indiana university. the founder director of the iu center for aging research and has over 25 years of experience studying new models of care for older adults. he is also a professor at the iu school of medicine, a research scientist and a director of the es ka gnaw zi office of research. his work is on improving the ways of people living with alz hiem alzheimer's.

he conducted the first randomized control care of patients living with alzheimer's. he's since led several other clinical trials designed to improve care for older adults with alzheimer's and continues to integrate family, community and medical professionals. despite improvements in recent years, many challenges remain to providing quality care to all people with alzheimer's medical workforce shortages. medical workforce shortages impact access to care. new and innovative models can be expensive to implement and rural americans can find themselves far from the resources they need. dr. callahan is acutely aware of these challenges and his research is improving the way we care for people with alzheimer's and ensuring that quality treatment becomes widely available. i want to thank you for your important work. we're so proud of you and

everything you're doing and we're very very glad to have you here today. thank you for being here, sir. >> thank you. and now i'd like to turn to our ranking member, senator casey to introduce our witness from pennsylvania. >> thank you, madam chair. it gives me great pressure to introduce a fellow pennsylvanian. i made reference to phyllis gallagher in my opening statement to today. phyllis is a caregiver. lives today in frackville. i didn't have a chance. i was late to the hearing and didn't have a chance to say hello to you in person. we're grateful. you're here. phyllis cares for her loved one, in this case her husband john. john is a former pennsylvania state employee. so am i. and we're grateful that phyllis is here to talk about the challenges she and her family have faced. john began showing symptoms of

early onset dementia when he was 49 years old. that was nine years ago. phyllis cared for john at home for as long as she could and john had to transition to a residential facility. in addition to caring for john, phyllis is an advocate for individuals living with also hi alzheimer's and their caregivers. i'm grateful that she's here to share her family's story. thank you. >> thank you very much. we'll start with dr. yaffe. >> thank you chairman collins and ranking members of the committee. this has really be a remarkable afternoon so far. alzheimer's disease is a brain disease and the most common cause of dementia, a syndrome of cognitive changes usually associated with aging. alzheimer's results in memory and other cognitive symptoms

from a combination of proteins. that leads to the death of nerve cells. despite tremendous advances in brain science over the past few decades, there's still so much to learn. it is unclear why some people get the disease and others who may have evidence of the proteins do not get the disease. further more, despite great effort we still do not have good treatments. what we do know for sure is that alzheimer's disease is devastating. as you heard from others, it carries a tremendous toll on the patient, the caregiver, the health care system and society. we need to change that there jektry through the development of effective treatments and ideally prevention. one of the most interesting changes in the field in the last few years is we now know it takes decades for the abnormal proteins to develop. therefore we have the opportunity to prevent, even before symptoms, to delay or even prevent alzheimer's. we're finally in a position to

study this. this has evolved to two very important strategies. one, studies of risk factors that might be modifiable and two want studies of new drug for people at risk. there is emerging evidence that several factors may increase the likelihood of developing alzheimer's. many of this risk factors are modifiable and good targets for individual and public health strategies. one of the things that we've learned and senate casey referred to is that what is good for the heart is good for the brain. why is that? that's because some of the same issues, like hypertension, diabetes, high cholesterol are also effect the risk of alzheimer's. we think there's an 50% increase of alzheimer's with these factors. most likely it's an effect on the blood vessels and also increasing the protein am loyd. several trials are under way to see if diabetes, cholesterol and

blood pressure medications may protect against developing cognitive impairment. but we need more research to understand how these factors may impact brain health. we heard from ms. shriver it may be important to intervene earlier in the life, in the 20s and 30s, not waiting until somebody is in their 70s and 80s. the concept of con native reserve has been proposed as an explanation. why do some people, are they able to tolerate the brain changes with alzheimer's and yet others can't. this is the idea that even with the brain changes you can tolerate and don't have symptoms and it's exciting because now we have some opportunities to maybe promote resistance to alzheimer's. factors that contribute to cognitive reserve include physical activity, education and cognitive stimulation. studies support the idea that being more active both in body and mind may prevent

alzheimer's. but more work is needed before making definitive conclusions. traumatic brain sure, tbi is a common condition that peaks in early adulthood with a second peak later in life. many studies reported that moderate and severe brain injury increase risk of dementia but there's less known about the minor tbi, concussion. the studies are controversial. we need more research in that area as well. an area of recent discovery has been the connection tweent sleep and alzheimer's. this is a fascinating area of investigation. it suggests that during sleep proteins are cleared out from the brain. we don't know what sleep is doing but maybe it clears out the proteins. therefore if sleep is disrupted due to sleep apnea or insomnia, the proteins might accumulate. we don't know if treatment of

sleep disorders might improve alzheimer's or delay it, but many are interested in exploring these. some argue it may not cure alzheimer alzheimer's. we need better drugs. because because the lifestyle factors are common and could be change, we could have a big effect. if people can reduce the risk factors by a modest amount, 10% to 25% more his call activity or better hypertension control, we could see a big effect on the downstream effect of the number that develop alzheimer's. many countries conducted trials in which the factors are addressed in combination. we need to have such trials in the u.s. there's also been tremendous interest in developing more effective drugs for alzheimer's to see if these may prevent the disease. in the u.s. there are four farm

lod pharmacological trials. but they don't have symptoms. these trials are critical in order to identify better treatments as early in the disease as possible. most of them target the accumulation of abnormal proteins and it may be possible to prevent or delay the disease. some experts, including myself, think that some day alzheimer's will be like chronic heart disease with several drugs that treat different aspects of the disease. it will not be the devastating diagnosis that it is today. in addition the drugs will be combined with lifestyle modifications. we need more research to do this. while the field has come a remarkably long way from when just a few decades ago people thought dementia was normal aging, we still have a long way to go. in 2011 the bipartisan national alzheimer's act that you, chairman collins coauthored

became law and provides hope to conquer alzheimer's. i urge you to support the 2018 by pass budget and i thank you for your interest and time and all that you do. >> thank you so much for your very interesting testimony. dr. callahan. >> good afternoon, chairman collins and ranking member casey. i also want to thank senator donnelly for that warm introduction. and thanks for the opportunity to speak with you today. i'm going to talk a little bit about exciting work on new models of care. but i want to talk first about how care can go really terribly wrong for people with alzheimer's disease. and i want you to imagine for a moment your elderly widowed mother, maybe she's 76 years old and she appears to enjoy wonderful health but maybe you've noticed some things. maybe you've noticed an accident

in the kitchen or maybe an accident in the car. maybe she noticed her repeating herself but she seems happy and she maintains a clean home which you help out with. and so you keep your concerns to yourself. then you get a call from the neighbor and the neighbor says your mom walked into their home last night and was rude and dishevelled. and as you investigate further, you find that your mom's finances are in a shambles. her bank accounts have been drained by a heartless scammer. she has overdue utility bills. you take her to visit with her physician and he says he saw the signs but he didn't want to break her spirit. later that year she falls and fractures her hip. she seems to be ping-ponging between the hospital and the nursing home. she's on a dizzying array of medications and also bouncing

between doctors and you feel completely alone. and i know stories like this will be played out multiple times this years and in the coming years. and while that story is tragic, i'm certain that someone behind me can tell a story that's much more tragic. it doesn't have to be this way. and that's what i was asked to talk about. to make the journey for alzheimer's disease less pa painful, we all have to do better. good care for failing brains begins with an i recall and accurate diagnosis. many things can look like alzheimer's disease and it's easy to dismiss the early signs. but a failing brain is not normal aging. once a patient receives a diagnosis of dementia, there's a complex road ahead. we have to give the caregiver education and support as well as the care recipient.

there's a lot of decision-making in front of them. treatments to consider. and lots of care planning including financial planning. people need to know their new vulnerabilities and the services and support available to them. but now there are road maps. research on models of care funded by the nih, va, ahrq, the hartford medication, center for medicare and medicaid, they show we can improve care. new models of care integrate the health care system with our community and our social support services. i'm going to give just one example of this research. scientists at indiana university tested an approach known as the collaborative care model that senator donnelly alluded to. that model provided primary care physicians and their patients with enhanced screening an a

companion diagnosis program for for patients diagnosed with dement dementia, the model provided care management through an interdisciplinary team. that team was led by an advanced practice nurse working with the patient's family and integrated with primary care. families were referred to the alds hiemer's association to get the support that's already available there. both patients and family caregivers in that study had improved symptoms, they were more satisfied with the care and they, less likely to receive harmful drugs. similar models have been tested at ucla and johns hopkins among many other places. in a report published just this month in health affairs, using another model also a nurse led intervention for persons with dementia in the nursing home, they showed that they could decrease unnecessary hospital use and they could decrease overall medicare costs.

the sad news is that these models are not reaching the millions of americans who could benefit. older adults in rural america are often hundreds of miles away from basic services. the main problem is an inadequate workforce. new models of care need to expand the reach of our limited physician workforce. this might include training nurses, social workers or other professionals to provide these services. however even that workforce is inadequate as the institute of medicine is documented. our country needs a large increase in the number of direct care workers who can provide hands on care for older adults with alzheimer's. i will end by saying, though, if there's one reality that i could best highlight, it would be this. family caregivers are the hands, the backbone and the heart of the nation's workforce for alzheimer's disease. this will not change over the

next 25 years. family caregivers will sacrifice their sleep, their health, their finances, their careers and their friends to provide care in the home for as long as possible for their loved one with dementia. they'll do it but they shouldn't have to do it alone. so often we hear family caregivers say at the end of their draining ten-year journey that they wish they knew then what they know now. the best way to help persons with dementia is to help their family caregivers. thank you. [ applause ] >> thank you very much for your testimony, doctor. ms. gallagher. >> thank you, chairman collins, ranking member casey and members of the committee for the opportunity to testify today on the toll of alzheimer's and other dementias. as a caregiver for my husband john i hope my story will shed

some light on the reality of this cruel disease. my husband john and i have been happily married since 1993. john is the nicest kindest man. we had fun together prior to his diagnosis. john was healthy as a horse, 6'2", 260 pounds and he he went to the gym every day. he ate well though he is a good irishman and did enjoy a beer here and there. john worked at the pennsylvania state capitol in a job he enjoyed. social and living a full life. after his father passed away in 2008 i started to notice that john was having a harder time finding his words. as we would later learn, this was the zpastart of our journey with alzheimer's. and john was only 49 at the time. we started with our primary care doctor who thought john might be suffering from a stroke or depression and anxiety following his father's death. when john did not get better we went back to the primary care

doctor six months later which was then followed by a visit to a local neurologist. we had no new answers and months went by as john continued to struggle with his speech and was showing more erratic behaviors. john was physically healthy. it was his brain that wasn't. after months of new questions and medications to address the symptoms, john started seeing a psychiatrist. the psychiatrist was the first one to suggest that these symptoms could be memory related. i tried to get john in to see a specialist at several facilities in pennsylvania but each of them had a six month wait. the memory and alzheimer's treatment center at johns hopkins had a three-month wait so that's where we went. if there were more trained specialists in this field, we might not have had to wait so long or travel so far to see someone. after our three-month wait, john and i made the first of what would be many drives from our

home in frackville, pennsylvania to baltimore, maryland for john to have a fuel neurological workup at johns hopkins. the team at hopkins wanted to use a p.e.t. scan but unfortunately it it was not covered by our insurance. after a wave of testing john was officially diagnosed with alzheimer's disease. he retired from his job in march of 2012 and we decided to do what we could to help the next person going through the disease. it was extremely important to both of us that we not be complacent. we got involved with our local alzheimer's association chapter. we walked together in the walk to end alzheimer's. john participated in several research projects at johns hopkins and in one of them was finally able to get the p.e.t. scan. he also decided he wanted to donate his brain to research after he dies. as john put it, they might not be able to help me, but what if

my girls get it. we also decided to live our lives fully while john still could. we went to ireland for our big bucket list trip. we went out a lot with friends. we made regular trips to new york to see his oldest daughter. i did anything to make him happy in the course of this and we had as much fun as we could. that does not mean we did not face our share of challenges. as time went on john always needed super vision. if i needed to take a shower, i would have a neighbor come over to watch him. i would do things around the house at night while he was sleeping. and the first time you have to help your spouse in the bathroom is traumatic and people don't tell you about that. because of his age john was not eligible for many programs available to people with alzheimer's. many of these programs are only for people over the age of 60. or they are aimed at people with physical disabilities. i could get help if he had lost

a limb, but i could not because of dementia. if you can't find someone to help you, you're stuck. i was able to get john into an adult day program two to three afternoons per week. and what a relief that was. i would go grocery shopping or run other errands without worrying about john. the difficulty in communicating with a surprise. when he couldn't find his words or had trouble speaking, we had to communicate throw what i came to call charades at the gallagher's. we had as much fun as we should in such dire circumstances. after john's diagnosis we talked a lot about what he wanted as the disease progressed. we talked about the likelihood of john needing to be in a nursing home one day and planned his funeral. i remortgaged our home hoping to care for him as long as i could. we renovated our first floor to include a full bath and laundry

room and to make the home handicap accessible to anticipate his future needs. medicaid helps to cover the cost of john's nursing home but i fill pay 18$1850 a month out of pocket. that means i don't go out unless a friend can pay for me. i work with a limited grocery budget. i participate in actives that don't cost money so the resources i do have can go to my husband's care. when someone has alzheimer's, it's not just the person who gets sick. it's the whole family. the disease takes a toll on a community of people. without our friends, family and neighbors, i would not have been able to care for john. john and i believe that you cannot just sit around and go into highw boohoo, you have to do something. that's why i wanted to be here today and i participated in if advocacy forum for the first time this year. this week i joined 1300

advocates from across the country to make a difference here in washington. we are here to speak on behalf of the 5.5 million americans living with alzheimer's today, to advocate for their care and fight for morery search funding. alzheimer's is a fatal disease with no means to prevent or slow its progression. investing in research is the only way to change that. alzheimer's research is currently funded at $991 million annually. but the scientists at the national institutes of health say they need more to make progress toward ending this disease. researchers at the nih ask for an additional $414 million for fiscal year 2018. as a caregiver and advocate, i am representfully asking congress to fulfill that request. today john is 58 and in the end stages of alzheimer's. this disease has ravaged our family. but that doesn't mean ve we havo

give up hoip hope. something positive has to come out of this. it's inspiring to be here on capitol hill for the first time with so many others and we're counting on you to take action so we can once and for all end alzheimer's. [ applause ] >> thank you. mrs. gallagher, you're getting a standing ovation. >> thanks, guys. >> thank you so much for that heart wrenching yet inspiring testimony. and for sharing your personal story with us. dr. yaffe, you talked about the potentially major impact that lifestyle changes could have on the incidents of alzheimer's disease. why would exercise and diet have

an impact on the accumulation of beta am ma loyd, plaque in the brain. what's the theory? >> i'll try and be succinct. it's a great question. some of these lifestyle factors most likely work by decreasing the amount of ammaloyd production. a good example of with sleep. we know there's a complex interaction between sleep and the ammaloyd accumulating. other factors interact in a different way, making the brain more resilient to the fact it might be there. we think with physical activity it's probably a multipronged effect. we think there have been beautiful studies showing that the hipaa campus increases with

physical activity. and the hippocampus is the part of the brain most relevant for memory. so there's something going on when people exercise. we think it's new newurons, new connections. it's fascinatinfascinating. we don't have all of the answers but there's a lot of interesting clues. so it sounds like, oh, just do a good diet or do this or that. but most of the things that i chose to discuss are the things that i think have the best evidence and actually have a lot of biology explaining why they may work. >> is there evidence that a mediterranean diet may have an impact in. >> i didn't discuss diet as much because i had a limited amount of time. i'd say that the area of diet is a very interesting one. a lot of interest in it. but not as much work that we know so far.

so the idea that single nutrients, vitamins or omega 3, those have been studied and haven't worked out so well. the field is now shifting towards more of a pattern of diet. so as you allude to, a mediterranean diet, a healthy diet where it's not just one nutrient but the whole shebang. and that's looking much more promising but again we still need more work to know definitively. >> there have also been clinical trials with drugs that have been able to clear some of the plaque tangles from the brain, and yet it appears that it did not restore cognitive function. do you have a theory about why that is the case? >> you know, that's not exactly my expertise but i know somewhat about it. >> you know more than we do.

>> i've been impressed with your knowledge. i think there's been a lot of hope that if you can get rid of the ammaloyd in the brain, the target of many of the drugs, that might improve cognitive function and delay alzheimer's. it looks very promising but we're not there yet. so some of the trials have either had to stop because of side effects or they didn't work as well as they did in the animal models, again showing us that the brain is much more complex than we thought and that this is just going to take more work. but i think we're on the right track. >> thank you. dr. callahan, so many older individuals rely on their doctors as a trusted source of information and kouns secounsel you've underscored the critical role that primary care physicians can play. yet you've also suggested in

your testimony that the overwhelming majority of primary care doctors and other allied health professionals have completed little or no formal training in providing care for people with dementia and advising their caregivers as well. with that in mind, i'm concerned by the president's proposed budget cut to the gejee gear yas workforce. there's a real shortage of trained individuals who can help car givers or even act as car givers. this is the only federal program that supports the education of doctors, nurses, physicians assistants, pharmacists, social workers and many other health

professionals who chose to serve our nation's seniors. how might these cuts affect the supply of health care professionals who complete training in geriatrics. >> this is one of the few programs left in order to help support the training. and what people may not know is that the geriatric workforce enhancement program is not just focused on phones, it's focused on nurses, soesh workers and other care providers as well. we're lucky at indiana university in the state of indiana that we have a geriatric workforce enhancement program and it is the singular place also where we can teach doctors how to work in a team. people don't necessarily know how to work in a team. they won't necessarily trained

to work on these inner disciplinary teams. they don't know that there's a lot that the nurse working alongside of them could do or the social worker working alongside of them could do. so the geriatric workforce enhancement program is almost like, well, this is one of the few things left. why would you want to get rid of it. so it's very important and it's exactly the kind of program that we're talking about also that can reach providers who have already left their formal education. because we can go out into their offices and in the places where they practice and show them how to redesign their practices. >> thank you. mrs. gallagher, i'm not asking you questions because i know my colleague, senator casey is going to offer a lot of questions -- ask you a lot of questions. but again i want to tell you how moved i was by your testimony. >> thank you. thank you for having me. >> madam chair, thank you very

much. phyllis, thank you. and i reiterate those expressions of gratitude. i can't even imagine what you have been through like so many members of this wider family in the audience. i guess one question i had was that you mentioned that there were, there were times when you weren't -- you didn't think you were prepared for what was happening or you had to provide a kind of care that you may not have had much training or warning about. anything in particular that you would hope that we would be able to tell people as they're embarking on a caregiving mission, what you didn't hear that you would hope that others would? >> well my mother had alzheimer's at 80. and with john having it at 50, i didn't realize that that could have happened. so i think educating the public

in general. i'm technically an artist, so believe me, being a caregiver was not exactly in my field. but as wife that's what you do. so i did anything i had to. but it would have been -- it would have been easier even just to find help. i called the agency on age in the county and was told he's under 60, we can't help you at all. that was that. i was like, okay, now what do i do. so then thankfully there was the alzheimer's association. and they helped. their 24-hour hot line got called frequently at 2:00 a.m. by me. also there are various support groups online which i found very very helpful to just talk to

others in my position, because throughout, especially with some of the support groups are international, so there's always someone awake that you can talk to. so it didn't matter what time of the day and hopefully within the group someone had a somewhat similar experience. but even my experience between my mother and my husband was very different. so you know, each case is different. >> and i don't want to bring you back to times that have been particularly difficult. but it is -- it's helpful for us to be able to hear direct testimony about what you have had to, what you've had to live through. what's the most difficult part, just in terms of the -- in addition to the obvious difficulty of accepting a terrible diagnosis. >> the acceptance, the friend and family. you have some people who go away. you know, it's not contagious,

but sometimes you feel like are we contagious, you know. and you learn who your friends are. and that was one thing. you're so alone is the other. you're very very much alone. and then you're so busy taking care of them that, you know, your day and you got to feed them and sometimes it would take from 7:00 in the morning until noon just to have him bathed and dressed. and there it's noon and you've got -- now it's time to feed him again. you don't get that time. and to get a break is very difficult. to find someone especially at our age because we don't have that many peers who are retired to like, say, hey if you have nothing to do, come on over and sit with him. that was hard. i was lucky i had very good

friends and i had a wonderful neighbor across the street who helped me a lot, especially in a pinch. she was a stay-at-home mom. i was thankful that she was there a lot to help me. and my husband's best friend helped us. every monday he sat with my husband so i could go to therapy. and therapy is a god send for me. my husband also went to therapy when he was first diagnosed as long as he could communicate. he went also to deal with the issues that we both had stress wise, mental health wise. and i found that to probably be the most important thing in my life. was the help i got from a therapist. >> i appreciate you sharing that testimony. it's helpful for us. last question i have is simple. your health care coverage. did you have the benefit of the state employees? >> you bet.

thankfully. because that covered, covered therapy. coffered everything but the p.e.t. scan. i was going to get a loan for the p.e.t. scan because that was $16,000 and john said why. so then the doctors at hopkins thankfully had a research project that involved p.e.t. scans and that's how john got his p.e.t. scan. >> great. thank you. i'm out of time but thank you very much. >> thank you senator casey. senator warren. >> thank you madam chair and thank you for the work that you've done to draw attention to this crisis in america. this disease is tremendously painful for families who live through the horrible experience of losing a loved one through it. this disease is also wildly expensive. i know that the chair talked about this. united states spends $259 billion a year on health care

related to alzheimer's disease. including $175 billion for medicare and medicaid. and yet nih spends less than 1% of that amount on alzheimer's research every year. [ applause ] yeah. breakthroughs will not happen if we're not funding our scientists and keeping in the fight as they push every day to make progress. let me see if i can just ask a couple of questions around this. dr. yaffe, you started your work on cognitive decline more than two decades ago. do we know more about dementia in older adults today than we knew when you first started 20 years ago. >> no question. yes. absolutely. >> and what role have nih grants played in your ability to stay in this fight? how many have you received over your career? >> gosh. i've probably gotten about 15

that i was the lead for and then maybe another you know 15 or 20 where i was a co-lead. obviously it's been instrumental for me. i wouldn't do what i'm doing without nih funding. it's my far the most important funder for research, medical research you know by far. and i want the say it's particularly important for young people. we're talking about the importance of the geriatric workforce but we also need to talk about the importance of the physician scientists and scientists in general who once they finish their training, they're expected to then get a grant, often a career development award to get so that they're from -- the training stage to the independent stage. this is critical and it's critical that the nih fund this. because otherwise people aren't going to go into science. >> we will lose our researchers

if they don't fund them. >> in particular it's the physician, the clinician scientist who have one hand in with patient care and understand the clinical issues and then the other trying to solve this problem. it's -- i can't tell you having served on the review committee for this at the nia, one of the committees you saw wonderful people who just didn't quite get a good enough score and you had a feeling they were not going to be able to stay in science. i can't emphasize enough the importance of that rtransition period. >> dr. callahan, you work in a very different type of research than dr. yaffe. your research examines how to improve the care that older adults with dementia and depression receive from their primary care physician. dr. callahan has support from nih also made a difference in your work? >> well, much like dr. yaffe

said, i would not be here without nih funding. i think one of the things that we sort of watch as we're marching along is originally the nih is funding you as untested junior scientists with career development awards and with an opportunity to go in a very different direction. so they're invest in you but they're holding you in science through their support. when that's successful, then we move on to independent grant funding. but then the nih also funds program development at our universities. so for example, indiana university had an royboll center. we splinter off, we're able to attract more younger people from a wider discipline. at each stage in a person's career you need the nih to consistently be there. >> i'm about to run out of time.

with the chair's indulgence, i just want to ask mrs. gallagher. i know that caring if your husband was a tremendous responsibility and how painful it must be for you to know that scientists will not be likely to come up with help in time. but that you are still here arguing, advocating on behalf of future alz hiheimer's patients families and caregivers. can you say a word about the importance of research as you see it and funding the nih? >> we need help. we need help. we need a cure. i'm worried about my husband's two daughters. the oldest is 3 the and i sure would hate to think that she only has 15 good years left. i would hate to think that. she has a 6-month-old and a 3-year-old. so i hope to god that my grandkids and that my kids don't

have to worry about this. so there has to be research. and just to go through, it's a life of almost daily tore meant torment of what you have to go through to keep you know everyday life. and it's absolutely necessary. it's amazing. it needs to be cured and it needs to be cured, you know, as soon as possible. >> thank you. i'll be blunt on this. we need more money for nih. not less. we need more money for nih. thank you madam chair. thank you. [ applause ] >> senator donnelly. >> thank you, madam chair. so all of you, to mrs. gallagher, god bless you in what you're doing. it is god's work in every way

shape and form. and to dr. yaffe, thank you for your work and to dr. callahan, we're so proud of you. you're doing such extraordinary things. and as you know, we have a large rural population in our state as well. and you shared that rural americans often live miles away from necessary services and have difficulty accessing the care they need. could you elaborate a little bit on the challenges that face rural americans with alzheimer's? and what we can do to ensure that everyone with alzheimer's, rural or not, has access to care and help? >> yes. about one out of five people with alzheimer's disease is in a rural area. and if you think about how -- so all day we've been hearing about how caregivers feel alone and the care recipients feel alone. you can't really get much more alone than being a caregiver of alzheimer's disease in a rural

area. it's the lack of services. we've heard about today that -- it's the drive. i mean it is a lot of work to take a loved one with a alzheimer's disease, put them in a car, drive them 50 miles and all of the things that could go wrong in that transportation event. the other problem that we have is that we've heard about the importance of neighbors and community and church. and sometimes even those are farther away in the smaller communities. so what people have been trying, minnesota has been innovative this way and wisconsin has been innovative this way, is to look at technologies. this has been true for a lot of rural health, good to use technology to try to reach people. we heard mrs. gallagher say how she was -- you know, you can

connect on the internet as long as it isn't somebody trying to cheat you or steal from you. but these services, i think we also have to reimagine the workforce, who is it that is in that community already that we could train to help out, even if it's only to come and visit someone for an hour or two. it's a very special challenge. >> it's an incredible burden for that caregiver, isn't it, at the end of the day. is there almost a feeling of being overwhelmed at times? >> absolutely. you hear terrible stories. stories of a husband who's worried about his wife wandering, so he ties the two of them together with a string. what else is he going to do. she gets up at night or wanders. or sad stories where people are actually locking people in because they've run out of options. there's no one to call anymore. and then again in terms of

costs, who are you going to call i mean when you're finally at wits' end. you end up calling 911. it wasn't an emt and a paramedic you needed, it was a direct care worker who could help you in the moment and maybe just to give a bath. it's an incredibly lonely experience to be a caregiver in a rural area. and i don't mean to leave the care recipient out. it's hard for them as well. >> dr. yaffe, you noted that in many other countries they've conducted multido main trials to study the impact of several factors together on the risk of reducing alzheimer's. is there a reason why these trials have not yet been conducted here in the united states? >> i think there's been a lot more interest in lifestyle and modifiable factors in europe, in canada, australia, for example. i think the u.s. tends to be a

little more focused on pharma and technology. and so i think that's one of the big reasons why. i think the tide is turning and actually i've put in a grant to hopefully be able to do such a trial in the u.s. and i think there's growing interest. so i'm optimistic that we will be part of this research direction as well. >> well i want to thank the panel. i want to thank you all for your courage and for your devotion to others and the work you do every day. thank you, madam chair. >> thank you very much, senator. i want to thank all of our witnesses today for your powerful testimony. and for the important work that you do each and every day. my thanks also to all of the advocates who are here storming capitol hill, making the case,

arguing for more funding that will lead to effective treatments, a means of prevention and ultimately a cure. we are making advances in understanding the arc of alzheimer's from prevention to cure. and yet that arc is long and we have a long ways to go. we know that every 66 seconds someone in our country is diagnosed with alzheimer's disease and ending this trend has to be an urgent national priority. we know that we can do better. we can do better in the way that we care for those who are living with alzheimer's and we know that we can do better in training our medical personnel and we know that we can do

better in helping our caregivers who put in an endless number of 24 sl 24/7 days. and most of all we in congress can do better in funding the vital research that one day will lead to the end of this disease or at least a means of managing it as a chronic disease, as dr. yaffe said. many of you have traveled long distances to washington to share your stories and to advance the fight against alzheimer's. this sea of purple represents hope. and you are making waves. so i ask that you keep at it, you are making a difference. our committee members are also committed to this cause. in fact, i was thinking as i

listened to the testimony today that one thing we could do -- and i should have talked to you about this in advance. but is for us to lead a letter signed -- and we would hope to get the signatures of every member of the aging committee, and send a letter to the president in opposition to the cuts to nih's budget, but also to the geriatric workforce development fund which is also important. and i think it would be a really powerful bipartisan step forward if we can get the signatures of every member of this committee. you're in? [ applause ] >> madam chair, this zip code

down at this end is also in on that plan as well. >> great. that's great to hear. committee members will have until friday, april 7th, to submit questions for the record. senator casey, do you have any closing words you'd like to say? >> well, madam chair, thank you for calling the hearing again. and also we know why she's madam chair now. we're grateful for that bipartisan mission that she just gave us. so i'm in, too, if it wasn't clear. i want to thank the members of the audience who are here and so many others who are here for a good part of the hearing today. phyllis, we're grateful you're here, both doctors, dr. yaffe, dr. callahan and maria shriver. and the people in the audience and so many millions like you across the country. i know you may not on some days feel like you're overcoming

something, you're not winning. but in so many ways you are and you've led in this part of your life a quietly triumphant life. that is much to be proud of. and we're grateful you're willing to share those stories and that inspiration with us. because in addition to the obvious and central role played by funding, your work and your stories and your family's stories will help us win this battle. god bless you and thank you. [ applause ] >> thank you all again. this concludes this hearing.

c-span's washington journal live every day with news and policy issues that impact you. coming up wednesday morning, new york democratic congressman tom suozzi, vice chair of discusses the upcoming budget deadline and tax reform. then congressman tim murphy, cochair of the congressional mental health office, talks about substance abuse policies. and bradford fitch, congressional management president and ceo on health care options for members of congress. be sure to watch c-span's washington journg live at 7:00 a.m. eastern wednesday morning. join the discussion. in case you missed it on c-span, karen harper royal at georgetown university's slaf sale dedication. >> naming these buildings for

isaac hawkins is the beginning of our journey together towards a healing from the jesuits of georgetown's legacy of slavery. >> matt cartwright holding a town hall meeting. >> we have moved the needle on this discussion. it used to be no way no how on anything like the aca. but now it's let's make it work. >> the competitive enterprise institute's marlo lewis on science and public policy. >> to the extent it's possible, scientific research should be separated from government. then you would not find climate science in particular being a faction ridden orthodoxy enforcing, you know, political movement but rather the quest for knowledge. >> treasury secretary, steve

meneau chin. >> make our business taxes competitive. >> former am bass tore to afghanistan. >> clearly we've got to work with the with the after afghanistan for stabilized situation against a taliban onslaught and then move ahead with a political process that's going to have to include pakistan. >> jeff sessions on trance nation crime argss. >> if you are a gang member, we will find you. we will devastate your networks, we will starve your revenue sources, deplete your ranks, and sees your profits. we will not concede a single bloc or a street corner to your vicious tactics. >> c-span programs are available at c-span.org, on our home page and by searching the video

library. acc culture secretary sonny perdue. they'll eliminate unnecessary farming regs lagsz. secretary perdue was confirmed by the senate on april 24th and was sworn in on april 20 fooichlk by associate justice clarence thomas. well, good afternoon everyone i'm glad the rain stopped for a short period of time. it's been a big day for me having been sworn in as the seskt agriculture this morning. i'm grod to work. we've been up here since january, a lot of decisions at usda and i'm anxious to go to work. we had a wonderful meeting with the president where he demonstrated an intricate knowledge of the issues of agriculture having do with trade, labor, regulatory reform as well as infrastructure. these people from all across the united states are legitimate